Meeting the challenges of the longest cancer survivors

The issues facing cancer survivors are being more intensively investigated in recent years and span from physical to psychosocial and spiritual sequelae of both cancer and its treatment. Amongst the longest cancer survivors are men with testicular cancer who have a high chance of cure but often require intense multimodality therapy. Studying these men should yield valuable insights into survivorship, and that is just what Allan “Ben” Smith did in a PhD at Sydney University.

Infertility and a range of ongoing sexual, cardiovascular, respiratory and neurological and cognitive side effects can be experienced

Firstly, testicular cancer occurs predominantly in the 3rd and 4th decade of life and being diagnosed at a young age with a life-threatening illness certainly causes psychological and existential distress. Many patients require surgery only to cure the cancer, but the removal of a testicle can lead to ongoing body image challenges. If additional chemotherapy or radiotherapy is added, infertility and a range of ongoing sexual, cardiovascular, respiratory and neurological and cognitive side effects can be experienced. Many of these side effects are studied separately and can be managed. Specific studies of cognitive dysfunction, for example are suggesting that this is not just a post chemotherapy phenomenon, and it can improve over time.

It has been difficult to draw conclusions from prior reviews of psychological in distress in testicular cancer survivors because of small sample sizes, poor methodology and confusion observations such as that the better studies showed less depression than the poorer ones. In a review of 66 studies by Smith and colleagues, 39 were rated as good quality (Smith et al Psychooncology 2017 Nov 23. doi 10.1002/pon 4596). Concentrating on good quality studies, one if five testicular cancer survivors suffer from anxiety that is clinically significant.

By comparison this level of anxiety would be found in one in eight of the general population. Of interest, in most good studies depression does not seem a prominent feature of people surviving testicular cancer when compared to the general population. However, fear of cancer recurrence is elevated in a third of people with testicular cancer which is within the range reported for cancer survivors in general, and is one of the most concerning issues for testicular cancer survivors. Mean distress levels were also comparable with the general population but when results are averaged across all, small subgroups of those with testicular cancer whose outcomes are poorer may have their issues diluted by the majority who do well.

There is some evidence that surviving testicular cancer in some men result in beneficial changes in lifestyle such as increasing physical activity and reducing smoking

There is some evidence that surviving testicular cancer in some men result in beneficial changes in lifestyle such as increasing physical activity and reducing smoking. There are also correlates reported for poor psychological outcomes and these include being single, having poor social support, being in a low socioeconomic group or unemployed and suffering from comorbid physical illnesses. Disease and treatment variables seem to have little impact on psychological wellbeing.

The result of these findings was the pilot testing of a web-based intervention to reduce anxiety and depression in survivors of testicular cancer (Heiniger et al Eur J Cancer Care 2017 Nov;26(6). doi: 10.1111/ecc.12698). Over six modules, evidence-based information, short interviews with survivors and on-line psychological interventions were provided. Web-based psychological interventions allowing self-management had been previously shown to be acceptable to help with coping with daily life, particularly when offered to younger patients.

The modules under a theme of “Getting back on track” were presented as train line maps with subheadings as the stops. They were designed to take about one hour each and were made accessible to the trial group over a 10-week period with pre and post testing for anxiety, depression and fear of recurrence. The major endpoint was acceptability of the program. Twenty-five men of the fifty-one approached with testicular cancer entered the study. They all had to be were recurrence free (from 6 months to five years) and had varying psychological profiles.

Using both quantitative and qualitative assessments, there was a high level of satisfaction with the program but only 14 men completed at least 80% of it. They found it easy to navigate and use and particularly liked the survivor videos. They certainly found the content relevant to their actual experience. Again, lack of time, particularly for those working full time was seen as a challenge. The participants also thought that having access to the resource early in the disease trajectory was important for future iterations of the resource. There were also technical suggestions about placeholders, progress indicators and the challenges when browsers were upgraded.

This pilot study provided rich information for the development of a better web-based support tool which was developed to be trialled on a larger population. It will be important to optimise the interactive components of the program and to ascertain whether such tools will have their maximum impact on those with more severe psychological distress.

About Author

Professor Ian Olver, AM is the Professor of Translational Cancer Research and Director of the Sansom Institute for Health Research at the University of South Australia. He chairs the Australia Health Ethics Committee of NHMRC and is President of the Multinational Association of Supportive Care in Cancer. A renowned oncologist, cancer researcher and bioethicist, Ian has held senior positions in Australia and abroad. With research interests in anticancer drug studies, symptom control, bio-ethics and psycho-oncology, Ian is the author of more than 22 journal articles, 19 book chapters, has written 4 books and edited 4 others. He is a regular commentator on cancer issues in Australia and internationally.